Data-Sharing Network to Give Assist to Children's Health

A grant from a federally funded nonprofit will help connect Seattle Children's with seven other pediatric hospitals to create a national network of patient data.

by CAROL M. OSTROM, MCCLATCHY NEWS SERVICE
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January 6, 2014
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Derek Streat, father of a 6-year-old girl who had a kidney transplant in 2010, has a very personal reason to help Seattle Children's connect with other pediatric hospitals around the country.

He sees a day when doctors looking for the best treatment for a patient could study medical records for hundreds or thousands of similar patients at hospitals across the country.

That could help identify ideal levels of anti-rejection medications for kids such as his daughter -- crucial because too little and her kidney is rejected, but too much and the medication becomes toxic to her kidney.

Streat's wish has just received a $7 million kick-start. Over the next 18 months, a grant from the Patient-Centered Outcomes Research Institute (PCORI), a federally funded nonprofit, will help connect Seattle Children's with seven other pediatric hospitals to create a national network of patient data.

The aim is not only to help find better treatments for children but to make it easier for researchers to enroll patients in studies and speed up research projects.

"At heart, it's really pretty simple -- it's sharing data and doing it in a privacy-protected way," says Streat, a member of an advisory group that has helped Children's with the grant.

With the eight hospitals combined, the databank will contain patient information from well over 1 million children, said Dr. Mark Del Beccaro, a researcher, emergency-department physician and vice president of medical affairs at Seattle Children's.

While some other networks have begun to share patient information, Del Beccaro said this is a first for children's data. "Nobody has been able to do this in the past … ever."

Creation of a network is important for researchers wanting to study children's disorders, because they are relatively rare, he said. For example, Seattle Children's might see 10 to 30 congenital heart disorders of a particular type in a year, but there might be 100 to 200 such children when records from all the network hospitals are combined.

Del Beccaro won't speculate yet on the first research projects likely to get under way, but obesity is on PCORI's agenda, and asthma, congenital heart defects, diabetes, bowel disorders and many others have been on Seattle Children's research radar for some time.

Of course, nothing is simple when it comes to sharing electronic health records, which don't easily combine, Del Beccaro said.

"You can't pass data across two systems and have it come out the same way," even if two hospitals have electronic-records systems from the same company, he noted. "It sounds unbelievable, but it's true."

Although there is some common language, it's more complicated than people think, Del Beccaro said, even for simple data such as blood-pressure readings or weight.

So the next 18 months will focus on building a system that will make sure the data that go in from different hospital systems will be entered into the new network in the same way.

Protecting patients is also key, Del Beccaro and Streat noted. Parents and older patients will have to agree to have their data shared, just as they do now. And they will also have to deliberately enroll for experimental research.

Ideally, families eventually would be able to seek out and enroll in particular types of research projects, said Del Beccaro, who is co-principal investigator for the project at Children's, with Dr. Rita Mangione-Smith, an investigator at Seattle Children's Research Institute and professor of pediatrics at the University of Washington.

The new network will team with smaller disease-specific networks such as the ImproveCareNow Collaborative, an existing network built from medical data shared by parents of children with inflammatory bowel disease. The knowledge gleaned through the collective data has helped reduce admission rates, Seattle Children's says.

This new shared-data warehouse will have its own patient-protection board, similar to those in individual research centers.

Currently, to enroll children across different centers, a researcher must comply with different requirements at each institution, Del Beccaro said, which can take many months, slowing research progress.

"It would be like sending a contract to 12 different lawyers and expecting them to agree on everything," he said. "This will streamline the process."

Del Beccaro also envisions the data warehouse as a way to make sure treatments that show promise are disseminated more quickly.

"There are some things that have to be done one patient at a time; there are others that you have to do across big swaths of population," he said.

In the big picture, PCORI has granted more than $93 million to help bring together 29 different data networks operated by both patient communities and health systems to form PCORnet, a national clinical-research network.

"PCORI's aim is to really kick-start and ramp up to a whole other level the ability to do things that will have a measurable impact on health in our country," Del Beccaro said.